Should I just leave well enough alone?

Hi. I've been taking Tegretol for 3.5 years now and Tegretol with Gabapentin for about a year. The two drugs manage my pain well and I am coping well with the side fx. I take 1600 mg of Tegretol a day and 800 Gabapentin. So far, my blood tests, carbamazepine levels have been good. But of course I'd like to take fewer drugs and my neuro would like that as well. She is worried that at the age of 47, I'm already taking pretty high doses, daily, with no sign of stopping. I don't have perfect pain control and I do get periods of breakthru pain, but I wait them out and then I go back to periods of no pain. Sometimes I wonder if I'm actually in remission and taking the drugs for no reason.

I see people in this forum talking about ramping down meds, having remissions, and such. What I don't understand is how you do that, how you know what's happening.

I've had two experiences tweaking my meds. Once I tried to taper my Tegretol back and when the pain came back within a week or two, I had to increase my meds to manage the pain (like a punishment, right?) Another time, I tried to switch to Tegretol XR and same thing, when it didn't work and I switched back to regular Tegretol, I had to take more of it.

I have internalized the idea that I just can't mess with my meds because I don't want to go higher than 1600mg a day.

So my question is - how do people taper down? How do you know when you can? Does it work? Is that what it means to be in remission? If I'm coping well, should I just leave well enough alone?

Thanks.

Faye

I know how you feel Faye. I hate taking meds. My GP has just told me to up my Amitriptyline! I wait until I feel a little better then I try to take slightly lower doses (I am currently on 600mg Pregabalin, 30mg of Amitriptyline), very slowly taking my levels down. Sometimes pain comes back straight away, sometimes a few weeks later. I feel that you have to juggle these meds until you feel happy with pain control but its worth a try to cut back if you can.

Tough call. But if you're getting break through and just toughing it out till it quits I don't think I'd be dropping down any. If you haven't seen a neurologist I suggest that. But, you are already on Tegretol, the drug of choice (generally) of many neuros. If a neuro thinks you may warrant seeing a neurosurgeon they might suggest that.

Personally, I think if it's working (which it sounds like it is) don't mess with it. I had great pain control for several years with Tegretol and then moved from Oregon to South Carolina and have struggled ever since then (over 5 years) to get the pain back under control) I blame rapid changes barometric pressure for re-triggering the beast. I have tried over 14 medications, nerve stimulator, botox injections.... I would love to do anything to just have the pain controlled with 2 medications. Stay strong

I’m not brave enough to taper down. I still have so much pressure in my eye. This tells me and my doctors, I am still suffering so much, even after 3 years. So for me, no. For you, I would just continue your meds. Good luck to you!!

I think if your pain is being managed by meds and the side affects are tolerable you should be glad. Your pain is managed. That is the first approach to managing this type of pain. I take meds, no my pain is not always managed but I am atypical bilateral and surgery is not an option for me in my opinion. Saw the top neurosurgeon at a teaching hospital from this site and he simply said I don't want to make you worse. I have the privilege of going into remission, I was for almost 20 years, but I am older now, so not sure it could happen, but it might. Sharon

I felt exactly .like you did and decided if I’m pain free then I should taper down to the point that I was completely off my Tegretol. What in fact happened was I was in remission and when the pain or the hell, returned I was almost meds free. It was absolutely horrible . I can’t even tell you how may trips to the ER for painful Dilantin infusions waiting for my Tegretol levels to return over time. I never rmanaged to having good pain relief again.I’m waiting for MVD surgery and wouldn’t you know I’m in a bit of a remission again but the ugly pain monster is still there so to answer your question, leave well enough alone and enjoy this pain free period.

Leave well enough alone and enjoy the pain free period. If you continue to be managed by meds. then a neurosurgeon should not even assume you need an MVD. Remember, check all those that have had invasive procedures. You could get completely pain free, you could have no relief or partial relief, or you could get that awful anesthia dolorosa, spelled wrong, which is nerve injury and very difficult to treat. I have had 13 plus spine surgeries since '94 and initial relief does happen but there are things that happen once you get cut that come back to mimic the whole thing all over again and there is not much that can be done. A good neurosurgeon should tell you this about all surgeries. Sharon

i had motor cortex stimulator put in to interrupt pain signals to brain. i didnt want to keep taking all the meds either. i was worried about what they were doing to my liver and kidneys. have you looked into something like this? sounds like you have classic tn with periods of remission. ant talk of mvd surgery. some people i have talked to are cured after this surgery. all depends on what is going on since we are all so different.

blessings for pain free day for you and to find a better solution.

I am not sure if this is the right discussion for my question; but I am sure one of you can help me.

I have been on every anticonvulsant made. All of them made me feel very tired and I was doing nothing but sitting or sleeping. When I was up and around my son said I acted like I was drunk.

My pain is so bad that my neuralogist put me on a new gabapentin type med. It is called Gralise. I started it 3 days ago and am in process of tritrating up. Already I am sleepy and want to just stay home and not get going. I have not finished my shopping and I really needed to get out today; but just could not do it. The good news is that my pain is much less and that is great. Do you know if I might just get used to it and I will get over this heavy, sleepy, dizzy feeling? Any advice would be great.

Cheryl

Dr. MIke: so glad you posted, despite your initial hesitation.

Thank you for devoting so much tie to study this difficutl condition!! We must look for help of all kinds, I think.

Dr Mike said:

I hesitate to chat because I get a lot of negative criticism as a chiropractor commenting on TN, even though I have over one hundred TN patients. Most of my patients have Meniere's disease, over 500, and about 30 have both. Anyway, I have been studying both for 15 years and have evidence that the most common cause of both is whiplash. It usually takes fifteen years from the time of the car accident or falling on your head for symptoms to appear. I give away a set of two 2 hour DVDs on my research and results called Health Talk. www.BurconChiropractic.com There are links for my peer reviewed paper on TN through the press release listed and info on ordering the DVD. ($5 if we have to package and mail it, which is our cost) Just trying to help, not sell you anything. My success rate with Meniere's is 97%. Unfortunately, TN is much harder to control in most cases. There is a testimonial in the paper and on the DVD of a woman who got off her meds completely after a couple months of upper cervical specific care.

HI, Faye,

I appreciate your concerns, having suffered with TN among other conditions ( chronic intractable daily migraine, adn GN, TMD) beginning w/ traumatic injuy in 1993.

The always recurring questions: (A) can i reduce the amt. of meds I take?

Only 5-6 yrs after my injury, I finally rec'd proper -- correct -- diagnoses to include the 2 cranial neuralgia conditions and migraine;then, slowly, , very gradually , over years adding drugs ... VERY slowly improving the p. levels. My experience thus far has been that while the improvement via meds takes months to achieve ooptimal results a skipped dose results in return of the pain w/ a vengance so FAST!!!!.

This, my neuor says, correlates with what is reported by her other patients. I wonder if that would help define whether one has a 'remission' or not?

I never give up occasionally thinking that one day, I will be able to reduce the amount of meds I take, and am vigilant in looking for opportunities to reduce the dosages if possible . Today, and yesterday, I sadly felt 'well, maybe this as good as it gets," it goes in waves or phases.

Among efforts, here was one positive one that helped me acheive a small reduction in meds:

I reached a point 3 years ago where I felt perhaps I should resume doing some daily cervical traction [neck and jaw injury is the origin of my chronic neurol'l probs] Before, I used to use a home Tx unit 3 times daily or more, (between 1994-97 ), but having not used it in a long time, I could not tolerate the 'normal therapeutic level' achieved by my hone unit,and would need to start w/ lower 'poundage'

So I returned to my first treating physician, a physiatrist. So I returned to her; we took ' a new look' at my situation.

in brief: we did a course of 'Cold Laser Therapy' , and it was very helpful. I did reduce my Celebrex intake , cutting it in half after -- which is a big deal! aS you meniton, one wants ot watch out for all the effects of meds that are metabolized by the liver, especially... but further, I am continue now taking one ( instead of two) capsules daily of celebrex; that doc said that studies have shown that ONE cap per day do not have the negative cardiac effects that 2/day have.

[ Previously, I found that if I reduce intake to one cap/day, or accidentally skipped a dose, my jaw would soon be in great pain. but now, I continue to do well w/ 1/2 the dose! YAY!.]

Yes, we are happy for the little things, eh?

Best, Michele


I canot answer that.

I do find it is a big challenge for me, as well. I feel sleepy most of the timne, except at night, when I am afraid to sleep. I juggle things by taking mini doses in the a.m. to be able to 'function' ( if you can call it that!).

BEfore bed, I hugely increase the doess of certain things, for better pain relief. Since most things do cause 'drowsiness', why not take advantage of htat for the sleep issues -- (this way, I seldom take what the doc prescribed for sleep.I
Cheryl said:

I am not sure if this is the right discussion for my question; but I am sure one of you can help me.

I have been on every anticonvulsant made. All of them made me feel very tired and I was doing nothing but sitting or sleeping. When I was up and around my son said I acted like I was drunk.

My pain is so bad that my neuralogist put me on a new gabapentin type med. It is called Gralise. I started it 3 days ago and am in process of tritrating up. Already I am sleepy and want to just stay home and not get going. I have not finished my shopping and I really needed to get out today; but just could not do it. The good news is that my pain is much less and that is great. Do you know if I might just get used to it and I will get over this heavy, sleepy, dizzy feeling? Any advice would be great.

Cheryl

.I was diagnosed with TN in 1999 and other peripheral neuralgia and autoimmune ( thyroid diverticulitis,facet joint (back) arthritis …since then…
I am 64 and was on lyrica,opiates, cymbalta, and amitriptylline …at varying times until last year (2012) when my new primary care doctor told me I must go off amitriptylline …(an anticholinergic) because of my age, and called me an addict, which infuriated me!
I had been going thru unusual moods and had been diagnosed with hypothyroidism by my new primary care doctor who had me on a thyroid yo yo and I felt I needed an endocrinologist so I saw one and after 3 months of thyroid my numbers were looking better but I was still not feeling my old self…I had been very active, considering!
I have seen the same pain specialist since 1999…He knows me and my history…and my concerns of medication…
I think he thought I was crazy in December 2012) when I told him I wanted off as much medication as possible!..I had slowly tapered off cymbalta because I thought
IT was making me moody… and I discontinued amitriptylline after I googled how to discontinue…as my primary care dr. had practically ordered…because I was older and should not take anticholinergics…
Taking lyrica and increasing opiates was about my only option for the pains …a neurologist had suggested lamotrigine…but that was after I was trying to decrease everything I could . (and the surgical options for TN but that was just for TN ).
TN was not my only problem…and my pain dr. Did increase the opiates but I was in ridiculous pain all over!
At first I decreased the lyrica too fast…(trying to go off lyrica 300mg daily in even 2 weeks tapering, was ridiculous…even though the drug company says it can be done in a week!) …I finally got OFF the lyrica because of depression,eye pain, and weight gain I had experienced …
…and I have been able to decrease the opiates to 1/10th the dose I had been on in december…and that is as needed now!
yes I had terrible sweating,weakness,pain…then with persistent decreasing …slowly the tn, and other burning,striking pain became less constant and more of a flare up lasting a day …stress, exercise-inducing…
I had been on lyrica since 2007 and missing even a day would put me into withdrawal symptoms!.. Don’t ever ever take that only as needed! I had been on opiates only regularly the last 4 years…gradually increasing and some people call it building tolerance so needing more but my overall pains were increasing…
I am not diabetic…I have more problems with the diverticulitis and irritable bowel now but the amitriptylline is anticholinergic and was helping those problems…I have since been given a mild anticholinergic for the bowel problem and that is helping…
My suggestion?..Tell your doctor your concerns and work with him or her…Do not try to discontinue any of these drugs without medical assistance…but google websites and get other people’s opinions …
and keep a daily pain…side effect…diary…I copied a 4 month diary and gave it to my pain specialist because I wanted to get off time release opiates and wanted lower dose immediate release…the drug enforcement agency, I was told, would want to know why…if my doctor asked…
As we get older, everything changes and each medical problem …syndrome…has to be dealt with but one person’s tolerance is never the same as another’s…my pain specialist is amazed my pain level is lower …I am thinking clearly but I am still weak…I have radiofrequency ablation done to facet joints in my back by my spinal anesthesiologist …
I do take Tylenol 500mg 2-3 times a day and have zolpidem 10mg for sleep and sometimes I take a diazepam 5mg if needed only!
Thank you to most of my understanding family…all of this is not without some anger…and gratitude to my pain specialist for his help!
Blessings

My thought is, if it isn't broke, why fix it? You seem stabilized on the 2 meds which would be the dream of those of us in constant pain. You have little to no pain most likely because of the meds you are taking…..do you really want to go back to being in pain again just to take less pills? I'd thank my lucky stars for just a few "pain free" hours!

I would enjoy the life you have now….. Good luck and God bless!

donoharm, in regard to if it isn't broke, why fix it? And lots of comments made on this page regarding meds controlling the pain. I very much understand donoharm's response. I am almost 58, and as you age things change, especially if you have had any surgeries for the spine. Things change for older sufferers because as we age we begin to deal with other issues and sometimes the meds to treat TN, ATN and on have an undesirable interactions with meds for the face pain. Thyroid, blood pressure and gi issues top the list. I am ATN bilateral and atypical GN bilateral and meds are only somewhat helpful and I too am on narcotics for pain, but they are more for my failed back surgery dx, 13 plus surgeries since '94 all levels of my spine. I woke up this am to so many notices in my email regarding Zapgirl's situation and I believe you have your answer ten-fold. I only wish meds were helping me. I have failed on the stronger ones like tegretol and lyrica that are a miracle cure for some and the list goes on but I can not take so many of them because of all the other meds I need to take for all of the above I have mentioned. Things may change for you, but for now you are every neurologist's dream success story for a patient that has responded to meds and should avoid surgery.

donnoharm, I will get back with you, friend you, I hear you, we are old ladies, I am a Granny and love it! I get your long story, I read it all, God bless you, and everyone who suffers from this pain Merry Christmas, I need to get busy, I am called Santa Granny and I have a lot of elf work to do for my grandkids so I will reconnect after the holiday! Sharon

Same issues, but higher doses. I just had MVD surgery on the 18th of Dec. Will let you know how it goes. My main reason for the surgery is to get off of the drugs.

Faye,

I’ll share with you what my neurologist and I do (did) when I was pain free on tegretol. If while on medication, I can get 4-6 weeks of NO TN pain that is when we slowly start reducing the meds. The first time we did this I had had bilateral TN aprox 9 mths…I went into a long remission 8yrs right side, 10 yrs left side.

The 2nd time I started to wean I knew within 24hrs that I couldn’t as the “twinges” started up .



My neuro has always followed this protocol with his TN patients because the meds we take are not very good for us ( to put it mildly)

It’s a personal decision. I’m glad to see you’ve discussed this with your neuro.

As for your questions, each time I tapered down by one 200mg pill of Tegretol XR and waited at least 3days before I could take another away. BUT please check with your Neuro we’re all different, your neuro will advise the best way to taper for you.

“How do you know if you can?” You don’t know. You just try and guaranteed your pain will let you know within 24-48hrs. If you have no pain after that time then you might try another taper, and so on…I usually went 3-5 days to be sure before I tapered again.



Being in remission for ME is : No meds/ No pain.

When I’m on meds and have no pain. I still have TN it’s just controlled/responding by/to the meds.



We all deserve breaks from the pain, deciding to reduce/taper your meds is a personal decision that you should make with your Neuros advice. Only YOU know what is right for you.

Maybe you can enjoy a few more weeks pain free, and then re-visit the taper question.

I should add that both times I tapered my meds, I had NO pain, no twinges, no breakthrough pain , nothing…one time it worked, one time it didn’t.

(( hugs )) Mimi

When I feel like I am heading for remission I gradually reduce the dose over a period of 3 to 4 weeks before I completely stop it. That is best way to find out whether v r under remission.
I am very lucky to have long period of remission. When in pain tegretol & gabapentin controls the pain well. Since I have taken these medicine for a very long time for almost 40 years, I have a memory problem. Also other side effects like dizziness & headache numbness in parts of my body. Though these side effects are worrying me they are better than sharp shooting pain,

Hello Everyone. I am amazed and so very grateful for all of your responses. So much information. I need to go through it all again to absorb what you all said. I certainly feel a strong emphasis on, "if it ain't broke, don't fix it." I get that, especially because my few attempts to "fix" it have resulted in the return of the pain with a vengeance. Since my neuro is opposed to prescribing any more Tegretol (no more than 1600 a day) I am highly motivated to leave well enough alone. And she has suggested that I explore surgery. I met with a well-regarded Chief of Neurosurgery in Boston who said that because he saw no compression, he was about 70% sure that surgery could help me. Not good enough, I thought. And so far, I'm not seeing enough good, long-term results from GK surgery to sign up for that. Not yet.

For a very long time I've been RELIGIOUS about my meds, taking them on time to the minute. I have experienced the horrendous impact of getting off track or missing a dose. Daylight savings! What a mess! I live with my double alarms, carry drugs and water with me everywhere, get up in the middle of the night because my rx is for every 6 hours. I've just begun relaxing in the smallest of ways, taking meds a few minutes early or late and most importantly, for me, adjusting my night doses so that I can sleep 7 hours in a row. This is the first time I've done this in over 3 and a half years and that extra hour is a good thing. I say I've been handling the side fx well, but that doesn't mean I'm not brain-fried, tired all the time and don't need to take naps at strange times. But yes, it's all a gift compared to the pain. I know that.

Mimi, I like what you said about the gradual tapering down. I'd probably go 100mg at a time, waiting weeks in between the next drop. That is IF I decided to try it. Because much as I'm worried about these meds, I'm quite terrified of life without them.

Also, I'm carrying a good chunk of extra weight. My doc also suggested that if I lost some weight, I'd be able to lower my dose. Worth a try, for that and other, obvious reasons. I can't blame my weight on any drugs. I've always been this way. :)

I'm going to remain status quo for now and see what the future brings. I have a stressful trip coming up in January, one that has triggered my pain in the past. We'll see how that goes.

Thank you all for your thoughts. Merry, Happy, Peaceful to All.

Faye